Volunteer group looks to aid ALS sufferers

News-Times, The (Danbury, CT), Kamilla Gary THE NEWS-TIMES

Published
1:00 am EDT, Thursday, June 10, 2004

NEW MILFORD - Shirley Fredlund was visiting her friend Joan Margaitis one day when she realized just how limited Margaitis had become by ALS, or Lou Gehrig's Disease. Margaitis was incapable of doing basic things like going to the bathroom or scratching an itch. Fredlund started looking for ways to help Margaitis communicate her needs. With a $1,500 donation from technology giant IBM and computer equipment that would allow Margaitis to use the only part of her body that was still mobile - her eyes - she would be able to talk again through a speaker that would be her voice. Margaitis, who lived in Morris, died shortly before the equipment reached her. That was 13 years ago. Since then, Fredlund has founded the all-volunteer Voice for Joanie. The organization helps get people connected with proper communicative devices. The devices can be as basic as a laminated cardboard sheet with letters and pictures the ALS patient can point to or as advanced as a small, laptop tool connected to speakers on which a person may type. When the disease really begins to progress, the patient can use a machine that is sensitive to eye movement. Depending on the level of sophistication, the units cost from $2,200 to more than $7,000. Fredlund remembered Margaitis as being an "Ivory soap" person, very sweet and very pleasant. She recalled calling Margaitis one day and being concerned with her friend's slurred speech. "It sounded like she had been drinking," Fredlund said. Soon afterward, Margaitis was diagnosed with ALS, amyotrophic lateral sclerosis. At the time, Fredlund said, ALS was a hard disease to diagnose. Patients would have to undergo several tests to rule out other causes. "Eventually you can't talk, you can't use your tongue and you can't eat," Fredlund said. Voice for Joanie raises money to buy equipment for people to use for as long as they need it. Fredlund has received donations from Newman's Own, founded by actor Paul Newman; the Ellen Knowles Harcourt Foundation; and the Albert W. and Helen Clark Meserve Memorial Fund. The organization has helped more than 400 people in Connecticut and in other states. Fredlund works with volunteers who come in as needed to pick up equipment, take equipment to someone or update computer systems. "ALS is a very expensive disease. People live a long time and there is a lot of expensive medicine and equipment," Fredlund said. Voice for Joanie does not charge patients for the equipment. "We give them what they want or need," Fredlund said. "If that's not right, we take it back and give them something else." The disease is called Lou Gehrig's disease for the famed baseball player who died of it in 1941. It causes progressive muscle weakness that results in paralysis and eventually death. "You can learn a lot from people who have the problem," Fredlund said. "When people call and we can help them, we do." For more information on Voice for Joanie, contact Shirley Fredlund at voiceforjoanie@juno.com or (860) 350-9034.